Long COVID Patients Are Trying Everything
With the lack of data on the health challenges related to Long COVID, the dearth of comprehensive treatment approaches, and the months- or even years-long wait times for the few treatment resources available, it’s no surprise that people living with Long COVID are turning to ad hoc solutions with little or no scientific foundation to try to get better.
A recent article in The Guardian interviews some patients turning to alternative therapies, from fairly innocuous, common-sense approaches like supplements, acupuncture, and exercise, to wallet-draining and potentially dangerous treatments like hyperbaric oxygen chambers and home stem cell injections.
Reporter Katie Thornton, who shares that she is also living with chronic illness, points out that these patients are looking for anything that has the possibility of improving their lives and health. One patient explains that “the lack of evidence behind these treatments is more or less irrelevant to him. ‘When you’re like this, you, I have no fear,’ he said. ‘mean, what do I have to lose? I’m so messed up, who cares?’”
Thornton goes on to sum up a central fact about living with chronic illness, writing, “For desperate patients, the longing to get better can render the difference between double-blind studies and anecdotal successes meaningless.”
As someone who is deeply committed to seeking out and understanding evidence-based medicine in every case, I have a certain degree of ambivalence about the dilemma these Long COVID patients are facing. On one hand, I know the feeling of “hey, I’ll try anything!” when the burden of illness and pain and fatigue is just too much, with no end in sight. On the other hand, one of the central reasons behind the culture of clinical review and government oversight of medical treatments and medications is that many, many people are harmed and even killed by untested, unproven health care approaches.
Dr. Jessica Jaiswal, a University of Alabama professor of health science who has studied the social history of alternative medicine, makes a very strong point in her interview with Thornton. “‘When people have been let down by the healthcare system, whether by neglect, dismissal or systemic exclusion,’ says Jaiswal, ‘alternative routes may provide hope and comfort but also may feel like the only way to exercise agency and power in a chaotic, disempowering situation.’”
It feels like the problem is multifactorial. People need more access to proven and tested medicine. There need to be more rigorous clinical trials for innovations in the treatment of Long COVID. And oversight of providers offering potentially dangerous and financially predatory services needs to be stepped up, with appropriate enforcement and penalties for those who have been exploiting patients’ desperation.
